Starting Chemo in December 2013

kjfromca

I got pretty tired towards the end of rads.  I started getting migraines, just the bright light part of the migraine.  I had to have DH take me to a couple of appts. because I couldn't drive.  That stopped after rads.  My sleep has been crappy lately, I've been getting up at 5 and falling asleep early and waking up all night long.

My sex life sucks.  I have no desire to have sex most of the time, when I do, I have to use lube and I get frustrated and then I lose interest.

I think I have become ADD and Bipolar.  My thoughts are all over the place and I can be really happy one minute and break down and cry the next.  I am definitely in Chemo/Tamoxifenpause.

I started walk jogging a few days ago, then my back started hurting me.  So I was thinking is this a sore back or cancer.  It's better today, but if it doesn't reside, I will have to deal with it.

Kim

DJJ

Sex? What's Sex???  I can't wait for sex again! My body is starting to feel normal and my desire is really coming back.  Hmmmm, problem being I'm single.  I guess I'll have to start dating again....sigh  Dating is a pain. 

RHGSR

I am so glad someone brought this up!' the frequency of sex has definitely decreased. It's been ok but I need a little extra "attention" to be into it. I'm sure once I start the Lupron we will need to lube up. I've heard coconut oil works really well. If course right now, it's hard to feel sexy when your underarm skin is falling off. :0)

missy6758703

OMG i love all you women...........your openness and honest answers make me laugh and smile.  I used to at least "think" about sex, now it doesn't even cross my mind and that worries me!!

chicopeach57

So, from the non-singles, how is your partner feeling about sex and approaching you?  Is it an issue?

RobinLK

My DH doesn't really touch the surgical area, but I think it is more out of fear of hurting me. He is still pretty randy...

So day 20/30 will be tomorrow, not today. Good news/bad news....port is working/still needed attention though. Stuck at hospital for 4 hours to dissolve the sheath at the end of the catheter. No rads today as they are only open until 3 and I will be at a different hospital 45 minutes away getting treated still. At least I don't need a new port!! 

Crazywabbit

DH has been out of "commission" for the past 6 years so it has  not been  an issue. Still I do miss it.

Jodi040812

hey ladies!  I had number 10 today.  Saw dr and two things happened.  First, he said not scans or anything would be done during rads.  The node seemed to be fine before we started rads.  Really?  Why didn't anyone say that earlier.

Two-  not happy about the beginning of the rash breakout.  I only have 3 bumps and it just started itching.  He said usually doesn't see that until week three.  Said this can take us off course:(. I said I'll do whatever.  So, he put a patch over mid mid chest that I am to change each day.  This will help protect it and hopefully stop. No one else has mentioned this.  Just lotion or powder soo thought I would show you what it is.  If you are having a rash issue, maybe bring it up if you think it will help.  As if the markings weren't enough of a give away, now I have a flesh colored maxi pad on my chest for everyone to see lol!  Whatever works though right!!

Lisaj514

Jodi, it doesn't matter what they put on you, that spunk and energy shine through and your eyes sparkle. You're so damn cute. I keep picturing your "beat it" dance. You'll have to do a reprise.

12/34 today. {{Deep sigh}}. So many more. Now I have Joan Lunden to add to my list. She has an aggressive type of cancer...wonder what it is? She had lx and now chemo then rads. I was Peggy Fleming today at rads...tomorrow either Cheryl crow or Olivia Newton John. Will see who I feel like in the morning as I don't really feel like myself yet... but getting closer. Walked/jogged (mainly walked) 3 miles today. My hands swell when out in the heat..but both do, not just L, and the skin on my arms feel itchy when I'm hot. No breast redness at all..yet. I keep checking and looking carefully for any symptoms. Scars have a tight feeling though. Sometimes I wonder if I'm really getting anything during treatment as it's so brief and of course I dont feel anything

missy6758703

Jodi I have a rash all over my chest as well....i was told to put cortisone on it but will ask about that patch deal tomorrow when i see my doctor.  Today was my #20 and I just started getting it a couple of days ago.

kimie06

I am so happy to be home... but what the heck... a few of my nails appear to be lifting a little bit ... seriously...3 months and my appendages start pulling this crap.  I can see this weak little shattered nail under my other nail... frig.....

done the rads trying to feel normal, getting ready to start submitting things to cancer society etc, for having to go to Toronto.  It just never seems to end.

Going tomorrow for my bloodwork for the BRCA wont find out for awhile.

Not sure how to start moving on from all of this.  

GAWD !!!!!!!!!!!!!!!!!!!

Crazywabbit

welcome home Kim, it must feel great. Now to get back to a new normal life.  Your family must be happy you are home. 

Jodi, lover your sense of humor. A maxipad on your chest LOL.

What ever it is hopes it helps.

5 days in a row is a long week for treatment, at least next week is only 4 days. extra day to let skin settle down.   Have a goodnight and hope every one gets some quality sleep.  I have cranked up the AC at night due to the hot flushes.

RHGSR

I have a rash too.  Was also told hydrocortisone but mine doesn't really itch so I haven't used it. My back itches though. Barbara weren't you saying yours does too? 

Welcome home Kim!! I think keep the faith mention a book about picking up the pieces after cancer. I ordered it from Amazon. Waiting for it to arrive. 

I was so naive when all this started. I thought we'd just take off both breasts and be done. Never thought about chemo pause, LE, recurrence rates, fingernails lifting off, rashes, constipation, hot flashes, hemorrhoids, sheets of skin melting off my body from rads. ... Etc. 

oranje_mama

kimmie, welcome home!

You ladies are wonderful. Thanks for getting me through this.

Today I was very emotional. Saw RO before my treatment. She assured me that there was nothing to worry about since they build the model with 1cm margin for error, and she could see from the computer that there had only been 2mm variation. She said the arm placement is only about getting the arm out of the radiation field, but if it was in the field it's just the skin to worry about. She checked my position on the machine & took an extra film to check.

She told me that the techs absolutely did not follow procedures. They were supposed to offer that I could talk to another doc who was there; also they should have given me her email.

I was crying and couldn't stop for a good long while. As I told doc, we have to place so much trust in the people treating us and if you lose confidence that they know what they are doing, it shakes you to your core.

I felt much better after I stopped at Starbucks. I walked in and the guy behind the counter said, you look like you could use a frappucino! I had a mocha cookie crumble frappucino & it tasted awesome. That apparently was the medicine I needed today

jbokland

sex.

My partner is extremely gracious with her consideration of my energy levels. Between surgery, chemo and anemia, it's been few and far between. She never makes me feel guilty, I bring that on myself. 

 The last time we had sex it wiped me out ( yep it was that good. Lol!)   

RobinLK

Kim, when your AZ trip is organized, let me know! I would be up for a get together!

DJJ

Kimie, Welcome home.  Noooooooo on the nails.  That's what my big toenails did.  I thought they were going to hold on, but no such luck. 

Oranje, glad your doc made you feel better. 

Today was rad 17 and my boob is sunburned feeling and red.  My nipple is really sensitive.  RO gave me a prescription for desoximetasone she said would help with the tenderness and if itching starts.  She said that I only have 6 whole boob rads left, I didn't know that, then 5 targeted.  Is that what boosts are?  Hopefully my skin can hold out for another week. ALMOST DONE!

So about that sex conversation. I figure I really need to start working on that :-)  Every Tuesday my friends and I go to Happy Hour.  For the last four weeks there has been a guy chatting me up asked for my number and has texted and has said "We should do (fill in the blank)" but never asks me out.  I'm attracted to him but feel like make a move or move on!! After cancer I don't feel like wasting my time! So last night I wore this little summer dress I have.  I bought it 4 years ago but every time I put it on, I can't do it.  It is to form fitting and I don't feel comfortable.  Not slutty but SEXY.  So I put it on last night, and once again went to take it off.  Then thought F#$k it! I just survived breast cancer, I'm wearing the damn thing.  So he finally officially asked me out :-) and so did another handsome gentleman.  Now I have two dates.  Hey a girl has to have a back up plan

missy6758703

DJJ, that is AWESOME!!!  Options are good!  My doc gave me the same prescription for my chest today...i put it on a little bit ago and it feels good.  Not as good as sex would feel, but it feels good!  

So today i was asked to be put into a trial. It will last for one year and I won't know if I'm getting the placebo or the actual drug.  It's not FDA approved so of course I am a little hesitant.  Kbokland, maybe you know something about it? its called Everolimus.  The people they want in the study are estrogen positive and Her2 negative.  Its supposedly a low dose chemo to be taken along with tamoxifen but without the side effects of high dose chemo we all just had.  Its supposed to help to prevent the chance of recurrence.   I would have to go in every six weeks for blood tests.........I'm thinking about doing it......thoughts from any of you?

Butt surgery scheduled for second week of July..........already dreading it.  Ugh.

Nighty night to all!

Michelle

RHGSR

okay ladies. I start boosts tomorrow. Out of 36 total (28 full rads and 8 boosts) I've got 8 left. I was so bummed today though when I talked to doc. I thought the boosts wouldn't include the area under my arm where I'm most burned ... But it will :0(. I know this is to kill any locally remaining cancer cells. But I don't know if I'm going to make it. I've cried all evening. I guess maybe cause I was so hoping these burns could start healing and when I found out today that they are still going to get zapped it put me in a funk. Really it's a blessing I started out so numb under my arm. I don't think I could tolerate the pain if I wasn't. What is so frustrating now is the "seeping" of fluid from the burns. I have to keep changing shirts all day because my underarm soaks through. Here are the most recent pictures. It's my under arm and under my "foob"

aff

Holli - I pray that you will get through the next 8 treatments quickly and without too much further damage. My thoughts will continue to be with you. 

missy6758703

Oh Holli, I'm so sorry you are going through that....it looks so horribly painful  I will say extra prayers for you tonight....

Hugs,

Michelle

RobinLK

DJ - that is awesome!!

Oranje - I am happy you got things squared away with doc. Hopefully those who were not so helpful got a verbal reminder as to what type of patients they are dealing with and how to do so correctly. 

Holli - that looks so incredibly painful. Sorry that the boosts are going to include your armpit. 

Michelle - I haven't been asked about any trials, but I waffle on whether I would do one or not. Not much help here, too indecisive...

Jodi040812

Holli- thinking about you!  praying it holds up and is not going to give you pain.

Michelle- no one has said anything about clinical trials over here either.  I'd do it if the SE's were not an issue.  

Today some ladies were talking if they were going to take the tam or other hormone blockers.  They weren't very positive.  One said depended on quality of life.  I just looked at them and said- I'd do anything to not have to go through this again.  And told them about y'all and how almost all of you are doing just fine on them.  One lady across from me smiled.  I know she agreed but was quiet because they were so vocal about their opinions.  Don't like people who say negative things that have no experience.  One lady did not even know why it worked just that it was suppose to lower reoccurance chances.  I had to explain that it blocks some of the ER and PR hormones.  Geesh!  Know what you are turning down before doing that.  Wow right!  So thankful for this board and the education we all got while being here!  We know a lot more because we are so open.  I do not care if you do it or not, but make an educated decision;). 

Big hugs ladies!!!:). Almost Friday for us rads girls!

missy6758703

Well today finds me doing quite a bit of research online about Everolimus and now i'm thinking this just may not be something I want to do....the side effects just seem to great.  It's a drug that has been used to treat kidney and pancreatic cancers and certain brain cancers and also advanced breast cancers after initial treatment has been done.  It could cause kidney and liver damage, lowers blood counts, increased risk of infections....I just don't know what to do....I understand how important clinicals are, but not sure that i want to be subject to the possible side effects.  I've had enough of those the last 8 months, do i want them for another year maybe? ugh. Where is Jbokland when I need her??? Our drug girl!!

kjfromca

Hi ladies

Holli - Was thinking about your skin situation this morning.  I have what's known to those who can meditate as monkey brain.  I woke up at 4:30 this morning with a million thoughts going through my head.  Your situation was one of them.  There is an aloe vitamin, I wonder if that could possibly help you.  I know nothing about it, other than I heard of a lady taking it during rads.  It might be worth checking on.  Also, at the end of rads I saw my dermatologist.  She gave me a prescription for a cream called EpiCeram.  If you pull up the website, it does say for treatment of radiation dermatitis.  I am so sorry that you are going through this.

DJJ - I am glad that you had the courage to wear that dress.  Crazy how we get that stinkin thinkin in our head and it keeps us down.... Then we put ourselves out there and great things happen.

Michelle - What a decision to make.  I pulled up the side effects of the drug on the Mayo Clinic's website.  However, if you pull up any drugs potential side effects, you think why in the hell would I want to take that drug?  I have a cousin who took chemo in the form of a pill as she had an autoimmune problem or something like that.  It was no picnic for her.  On the other hand, I believe that we need to do what we can to lower our chances of recurrence.   I feel like you need to follow your heart on this. 

Robin - I will get back to you when the dates of my Phoenix trip are finalized.

Jodi - I am so glad that you have a strong independent personality.  Thinking about you sitting there having that conversation with those ladies makes me laugh....

Kim

keepthefaith

Holli, wow, I hope your healing starts soon. That looks so painful. 

Whoever asked about the boosts, yes,  they target the area where the tumor/nodes were, only. So, a smaller area and the other area will start to heal.

djj, good for you! I hope your dates go well. Sometimes men just need an extra push!!! My question is, so, when do you tell the guys about BC...? 

michelle, good luck on your decision with the trial...I don't know if I could wrap my mind around another "treatment"  right now, unless I had to. Maybe I'm being selfish or maybe just not the right timing! Either way, follow your gut.

((HUGS))

DJJ

Keepthefath, they both know.  I found that it doesn't seem to be an issue.  My hair is a give away not to mention the dress showed my port lump and port scars. Maybe because its so common.  A few weeks back I a man compliment my G.I. Jane hair and ask what made me cut it like that.  When I told him he shrugged his shoulders and said "my cousin had it and she's fine."  Then he proceeded to follow me around like a puppy dog until I gave him the slip :-)

Michelle, that's a hard call.  I'm a herceptin girl and I read up on it and the clinical trials.  In the case of herceptin the ladies that got the herceptin and not the placebo turned out to be the lucky ones.  My MO says hundreds of thousands of women are alive today because of herceptin.  So it could be a great thing!! But I understand your hesitation.  I would probably hesitate too.But Kim is right everything has side effects and it could potentially lower your chance of reoccurance.

Holli, Oh you poor thing.  I'm so sorry.  Hang in there!  There is a light at the end of this tunnel and we're coming up on it fast!

oranje_mama

Holli, have you seen a dermatologist?  maybe there is more that can be done (drugs, creams, etc)?  when I saw a dermatologist a couple of weeks ago to check on my nails, she was clearly so excited to have me as a patient.  Something different than the usual symptoms, I guess.  She told me that she did her fellowship at Northwestern where there is a big cancer center and she saw a lot of cancer patients then.

DJJ, you go girl!  

Michelle, those SEs do not sound "light".  (ok, "lighter" than the chemo you just did, but . . .) If I were you, I'd like to talk with someone (doctor or nurse) more in depth before making a decision.  How long do you have to decide?

My doc definitely spoke to the rad techs.  They are not so chatty with me now.  But they are being very careful.  So, the "vibe" in the room may have been ruined but I'm more confident that they are being careful and know what they are doing now.  I'm just so ready to be done with all of this.

Went to swim practice again today (so that's the 2nd time this week).  I'm keeping up with sprints for a time (in fact, I find myself thinking, not half bad for a cancer patient!) but I fade.  Sometimes have to sit out a lap or two.  And I still ache all over.  I've decided that it's a good ache, though.  Not a chemo ache, a "building back muscles" ache.  That's what I tell myself anyway.

I had Rad #13 today.  Getting pink, but not much discomfort at all.  And still exposing the boob to chlorinated water (albeit greased up with a thick layer of aquaphor).  Starting to get optimistic that I'll be able to keep swimming all the way through . . .

DJJ

Heading to #18 today.  My boob is red today and hurts!  I DON'T WANT TO GO!!!!!!

missy6758703

Oh DJJ, I know just how you feel! #22 today and my boob also hurts and is red along with my chest and back.  Can we all just scream in unision "WE F*****G HATE THIS!!!!" ?? I think it would make us all feel better.

Work is a drag today.........then I have radiation to go to at 3:45.....so much to look forward to! I am going to go buy a ceiling fan for my bedroom....guess thats something, huh? Right now i have a small fan actually sitting  on my mattress blowing on me all night....thinking a ceiling fan may be a little safer.

Still so undecided about this clinical trial, the more i research the drug online the more it makes me not want to do it.